Something shocking and creepy, deaf wannabes, pretenders and others - Page 3

Kaitin · 10-20-2007, 07:12 PM

Quote:

Originally Posted by wylz

It is very difficult to understand. The only thing I can say is that, for me, it is a question of being myself. Like I was born in the wrong body.

Sean: Thank you for answering.

I was thinking "odd!" until I read your quote. I have read "like I was born in the wrong body" about people wanting sex change operations. When they say this I don't understand but accept it. And sex change must be painful expensive surgery, with removal of healthy organs. I guess if you are saying the same I accept it.

Do you think such feeling is a mental illness? I don't think most transgender people believe they are sick. Again, no offense meant, but transgender seems similar. Do you think this?

Kaitin · 10-20-2007, 07:30 PM

"BIID" into PubMed:

Amputees by choice: body integrity identity disorder and the ethics of amputation.
Bayne T, Levy N.

Department of Philosophy, Macquarie University, Sydney, NSW 2109 Australia. tbayne@scmp.mq.edu.au

Should surgeons be permitted to amputate healthy limbs if patients request such operations? We argue that if such patients are experiencing significant distress as a consequence of the rare psychological disorder named Body Integrity Identity Disorder (BIID), such operations might be permissible. We examine rival accounts of the origins of the desire for healthy limb amputations and argue that none are as plausible as the BIID hypothesis. We then turn to the moral arguments against such operations, and argue that on the evidence available, none is compelling. BIID sufferers meet reasonable standards for rationality and autonomy: so as long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests.

Very surprising to me!

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Healthy limb amputation: ethical and legal aspects.
Johnston J, Elliott C.

Center for Bioethics, University of Minnesota, Minneapolis 55408, USA.

A surgeon in Scotland has amputated the legs of two consenting, physically healthy patients. Although a handful of medical professionals believe that the desire for healthy limb amputation is symptomatic of a mental disorder that can be treated only by amputation, there is currently no consensus on what causes a person to desire such a disabling intervention. As long as there is no established body of medical opinion as to the diagnosis and treatment of such a condition, performing the surgery may be a criminal act. Given the ethically problematic history of surgery for psychiatric conditions, as well as the absence of sound medical data on this condition, surgeons should exercise great caution before complying with a request to amputate a healthy limb.

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Clinical and theoretical parallels between desire for limb amputation and gender identity disorder.
Lawrence AA.

alawrence@mindspring.com

Desire for amputation of a healthy limb has usually been regarded as a paraphilia (apotemnophilia), but some researchers propose that it may be a disorder of identity, similar to Gender Identity Disorder (GID) or transsexualism. Similarities between the desire for limb amputation and nonhomosexual male-to-female (MtF) transsexualism include profound dissatisfaction with embodiment, related paraphilias from which the conditions plausibly derive (apotemnophilia and autogynephilia), sexual arousal from simulation of the sought-after status (pretending to be an amputee and transvestism), attraction to persons with the same body type one wants to acquire, and an elevated prevalence of other paraphilic interests. K. Freund and R. Blanchard (1993) proposed that nonhomosexual MtF transsexualism represents an erotic target location error, in which men whose preferred erotic targets are women also eroticize their own feminized bodies. Desire for limb amputation may also reflect an erotic target location error, occurring in combination with an unusual erotic target preference for amputees. This model predicts that persons who desire limb amputation would almost always be attracted to amputees and would display an increased prevalence of gender identity problems, both of which have been observed. Persons who desire limb amputation and nonhomosexual MtF transsexuals often assert that their motives for wanting to change their bodies reflect issues of identity rather than sexuality, but because erotic/romantic orientations contribute significantly to identity, such distinctions may not be meaningful. Experience with nonhomosexual MtF transsexualism suggests possible directions for research and treatment for persons who desire limb amputation.

I don't understand the underlined sentence. Transgender and BIID is not similar maybe?

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I hadn't read about this problem before and didn't think PubMed would have articles. I still don't understand really, but very interesting. I like reading about such differences that I haven't imagined before.

Sean: What do you think? Thank you.

kvinnemarie · 10-20-2007, 07:34 PM

Quote:

Originally Posted by Kaitin

Sean: Thank you for answering.

I was thinking "odd!" until I read your quote. I have read "like I was born in the wrong body" about people wanting sex change operations. When they say this I don't understand but accept it. And sex change must be painful expensive surgery, with removal of healthy organs. I guess if you are saying the same I accept it.

Do you think such feeling is a mental illness? I don't think most transgender people believe they are sick. Again, no offense meant, but transgender seems similar. Do you think this?

Hi again.

My sex change wasn't tremendously painful (but my family has a lot of pain tolerance). I wish I could have children but I didnt want to be a father to do it.

I don't think GID should be in the DSM. But I can see why it could be: GID is a physical problem (improper brain) but the disorder manifests itself with mental issues: depression, claims of being the opposite gender (at an extreme young age) and other things that are not physical.

kvinnemarie · 10-20-2007, 07:37 PM

Quote:

Originally Posted by Kaitin

alawrence@mindspring.com

Desire for amputation of a healthy limb has usually been regarded as a paraphilia (apotemnophilia), but some researchers propose that it may be a disorder of identity, similar to Gender Identity Disorder (GID) or transsexualism. Similarities between the desire for limb amputation and nonhomosexual male-to-female (MtF) transsexualism include profound dissatisfaction with embodiment, related paraphilias from which the conditions plausibly derive (apotemnophilia and autogynephilia), sexual arousal from simulation of the sought-after status (pretending to be an amputee and transvestism), attraction to persons with the same body type one wants to acquire, and an elevated prevalence of other paraphilic interests. K. Freund and R. Blanchard (1993) proposed that nonhomosexual MtF transsexualism represents an erotic target location error, in which men whose preferred erotic targets are women also eroticize their own feminized bodies. Desire for limb amputation may also reflect an erotic target location error, occurring in combination with an unusual erotic target preference for amputees. This model predicts that persons who desire limb amputation would almost always be attracted to amputees and would display an increased prevalence of gender identity problems, both of which have been observed. Persons who desire limb amputation and nonhomosexual MtF transsexuals often assert that their motives for wanting to change their bodies reflect issues of identity rather than sexuality, but because erotic/romantic orientations contribute significantly to identity, such distinctions may not be meaningful. Experience with nonhomosexual MtF transsexualism suggests possible directions for research and treatment for persons who desire limb amputation.

I don't understand the underlined sentence. Transgender and BIID is not similar maybe?

Anne Lawrence is a crackpot. Do not believe hir! Please read http://www.tsroadmap.com/info/anne-lawrence.html and related pages: http://www.tsroadmap.com/info/bailey...-lawrence.html They are VERY comprehensive!

Kaitin · 10-20-2007, 07:47 PM

Quote:

Originally Posted by kvinnemarie

Anne Lawrence is a crackpot. Do not believe hir! Please read Anne Lawrence on transsexualism and related pages: Categorically wrong? A Bailey-Blanchard-Lawrence clearinghouse They are VERY comprehensive!

I don't know Anne Lawrence and never read about her (I know nothing about transexuals/transgender). But she has a web site (Google "Anne Lawrence") with this page. Does this mean she was a man and had surgery? Her page doesn't say. Another page says "Anne Lawrence has been there, done that as an MtF transgendered doctor with a huge heart for people with gender dysphoria. My personal doctor, her site is all inclusive and rates GRS, facial feminization and breast augmentation surgeons based on their resultant success rate and modern updated procedures. Although she has authored some controversial views concerning autogynophelia that not every MtF-TG agrees with, she's tops in my book and has a doctorate in gender studies. ". So she was a man and then changed, right?

OT maybe, but - ? (Sorry I haven't read all your links, but will later. I need to logoff.)

kvinnemarie · 10-20-2007, 08:13 PM

Quote:

Originally Posted by Kaitin

I don't know Anne Lawrence and never read about her (I know nothing about transexuals/transgender). But she has a web site (Google "Anne Lawrence") with this page. Does this mean she was a man and had surgery? Her page doesn't say. Another page says "Anne Lawrence has been there, done that as an MtF transgendered doctor with a huge heart for people with gender dysphoria. My personal doctor, her site is all inclusive and rates GRS, facial feminization and breast augmentation surgeons based on their resultant success rate and modern updated procedures. Although she has authored some controversial views concerning autogynophelia that not every MtF-TG agrees with, she's tops in my book and has a doctorate in gender studies. ". So she was a man and then changed, right?

OT maybe, but - ? (Sorry I haven't read all your links, but will later. I need to logoff.)

Anne Lawrence (

) is a man who is an autognephile. That is, they are sexually excited at the idea of being a woman or having female genitals or going through the transition. They are more closely related to transfestic fetishism and not gender identity disorder.

I'm biased because Lawrence and his ilk is responsible for a lot of distress and misunderstanding as they pass themselves off as real transsexuals.

wylz · 10-20-2007, 08:28 PM

Quote:

Originally Posted by Liza

I see there is an entry at this website transabled.org about how being transabled is not a choice, like being gay is not a choice. That is a pretty strong point made in this website.

Yes, it is a pretty strong statement. Do you agree that being gay is not a choice? I hope you do, because I feel that way. And having Body Integrity Identity Disorder is also not a choice. Who would chose to be dealing with so much pain and anguish, who would chose to be rejected by family and friends, and be ostracized by people with disabilities, and to be rejected by the medical community? No, it's not a choice. I have BIID, I accept it. I wish I didn't, because my life would be much simpler. But I have it, and the only way I will be able to find some peace will be to become a paraplegic. I am not saying that becoming paralysed would eliminate BIID, but it would give me peace of mind and the ability to move on.

Quote:

Originally Posted by Kaitin

Sean: Thank you for answering.

You're most welcome.

Quote:

Originally Posted by Kaitin

I was thinking "odd!" until I read your quote. I have read "like I was born in the wrong body" about people wanting sex change operations. When they say this I don't understand but accept it. And sex change must be painful expensive surgery, with removal of healthy organs. I guess if you are saying the same I accept it.

Yes, I am saying that BIID is very similar to people who need sex change operations. Please note, it is a question of NEED, not of WANT.

Quote:

Originally Posted by Kaitin

Do you think such feeling is a mental illness? I don't think most transgender people believe they are sick. Again, no offense meant, but transgender seems similar. Do you think this?

I have written on this topic a lot. The best entry I think is found here:
BIID as a mental illness - BIID-Info.org

In short, we don't know whether it is a mental illness or not. There are many suggestions, from mental illness to neurological disorder. For me, I don't really care what label you slap on me, as long as it gets me where I need to be - paralysed. I simply don't understand why society in general has such a negative view of mental illnesses anyway.

Quote:

Originally Posted by Kaitin

I hadn't read about this problem before and didn't think PubMed would have articles. I still don't understand really, but very interesting. I like reading about such differences that I haven't imagined before.

There are many more places than PubMed that have published articles about BIID. On Main Page - BIID-Info.org I have collected everything I could find. There are currently 30 entries in the Research category of the site (Category:Research - BIID-Info.org), all published research articles or similar entries, and I have more to upload later. We have made comments and given feedback on these entries, so not only can you find the reference to the original article, but our take on it. There are some that we think are very good, and others we think are very bad

Claire_C · 10-20-2007, 09:25 PM

Kaitlin your sincere interest in learning more has me back for one last post.

There is another document that you might find very interesting:

Can vestibular caloric stimulation be used to trea...[Med Hypotheses. 2007] - PubMed Result

Can vestibular caloric stimulation be used to treat apotemnophilia?

Ramachandran VS, McGeoch P.

Center for brain and cognition, UCSD, La Jolla, CA 9209, United States.

Apotemnophilia, or body integrity image disorder (BIID), is characterised by a feeling of mismatch between the internal feeling of how one's body should be and the physical reality of how it actually is. Patients with this condition have an often overwhelming desire for an amputation- of a specific limb at a specific level. Such patients are not psychotic or delusional, however, they do express an inexplicable emotional abhorrence to the limb they wish removed. It is also known that such patients show a left-sided preponderance for their desired amputation. Often they take drastic action to be rid of the offending limb. Given the left-sided bias, emotional rejection and specificity of desired amputation, we suggest that there are clear similarities to be drawn between BIID and somatoparaphrenia. In this rare condition, which follows a right parietal stroke, the patient rejects (usually) his left arm as "alien". We go on to hypothesis that a dysfunction of the right parietal lobe is also the cause of BIID. We suggest that this leads to an uncoupling of the construct of one's body image in the right parietal lobe from how one's body physically is. This hypothesis would be amenable to testing by response to cold-water vestibular caloric stimulation, which is known to temporarily treat somatoparaphrenia. It could also be investigated using functional brain imaging and skin conductance response. If correct our hypothesis not only suggests why BIID arises, but also, in caloric stimulation a therapeutic avenue for this chronic and essentially untreatable condition.

PMID: 17292561 [PubMed - indexed for MEDLINE]

A couple notes on this. First, Ramachandran is one of the foremost neurologists in the world. He has written books (see the great reviews for his work at Amazon.com) and hosted BBC radio shows on the subject. Google his name and you'll find all kinds of ground-breaking research that he has conducted.

Secondly, I actually participated in this study. They examined me and performed tests on me and it was their opinion that my kind of BIID is essentially the same condition as the more common desire for amputation. The vestibular caloric stimulation did seem to work for about 24 hours. That made sense because VCS works for about 24 hours on people with somatoparaphrenia as well. But I was sick for much of those 24 hours and so it's not really a viable treatment option and I'm not terribly sure that I wasn't simply distracted by the nausea. But it's a starting point and we'll hopefully know more about it once they have a lot of data to compare.

(Note that Ramachandran changed the second I of BIID from Identity to Image - he believes it's a question of body image)

Here is my blog entry on my trip to see Ramachandran and McGeoch:

Vestibular Caloric Stimulation » transabled.org » Blogging about BIID

Thanks Kaitlin for your sincere interest.

Kaitin · 10-20-2007, 09:27 PM

Quote:

Originally Posted by wylz

For me, I don't really care what label you slap on me, as long as it gets me where I need to be - paralysed. I simply don't understand why society in general has such a negative view of mental illnesses anyway.

Wow. I'm so surprised to know about this problem. I never imagined or knew.

To me mental illness = a problem to be cured or tried to. It is not healthy and not seen as "the normal". Maybe it doesn't matter to the person though. I know nothing about any of thread, so I maybe shouldn't say. I am trying to understand and I am so surprised with the replies.

Thank you for answering.

Another question: Is saying "pretending to be handicapped" correct (before surgery)? Is "pretending" bad or offensive?

And three more (sorry - I always am curious!

) Please say "stop" if you want): Do you tell family and friends? With homosexuality people say often "I knew when I was a young kid" - same with BIID? And how common is BIID? Extremely rare?

Kaitin · 10-20-2007, 09:30 PM

Quote:

Originally Posted by kvinnemarie

Anne Lawrence (

) is a man who is an autognephile. That is, they are sexually excited at the idea of being a woman or having female genitals or going through the transition. They are more closely related to transfestic fetishism and not gender identity disorder.

I'm biased because Lawrence and his ilk is responsible for a lot of distress and misunderstanding as they pass themselves off as real transsexuals.

What is "transfestic fetishism"? (If this is adult-only, please say and don't answer - this isn't adult-only spot. Thank you.)

jillio · 10-20-2007, 10:31 PM

Quote:

Originally Posted by wylz

Jillio,

You are working from many assumptions that are just that. Preconcieved notions. This is not bad per se, but it is also fairly representative of the uphill battle people with BIID have to fight.

There are no real studies to back me up on this, though it has been mentionned in several studies (which you can find listed on Main Page - BIID-Info.org if you can be bothered). Treating people with BIID with OCD therapies does NOT work. This is of course based on anecdotal evidence, experience gathered from a number of individuals with BIID. There's also cognitive behavioural therapy that's been tried on many people with BIID, and to a person, they all report that the CBT has helped them in many ways, but has left the BIID completely untouched. I find your claim that CBT is not effective just because we don't want to change quite offensive, really. I would MUCH rather not suffer from BIID.

You're right, BIID isn't in the DSM. As Robin and Claire said, this is likely to change. The fact that a condition is not currently in the DSM does not mean that it does not exist, and does not mean you can explain the condition by trying to pigeonholing it into currently listed conditions in the DSM.

My transsexual friends will forgive me here, but... Pretending and eventually surgery are actually the recommended treatment options for Gender Identity Disorder. If you argue that GID is a mental illness (as shown by the fact it's in the DSM), then your argument doesn't stand. If you say that GID isn't a mental illness, then, BIID is also not a mental illness, as both conditions are so closely related (again, according to Dr. Michael First, it's not just me saying this, but a recognised expert in the field of psychiatry. Actually, several experts in that field).

BIID is not quite the same as Body Dysmorphic Disorder either. A major difference here is that in BDD, people generally perceive their attribute as being wrong, when in fact it's not, it's just a question of erroneous perception from the BDD sufferer (obviously grossly generalised). In BIID, we are fully aware that our limbs and body are perfectly normal, they just don't fit in with our body image.

Are they? Are they really? It's interesting you say that. There has actually been a fair bit of writing on the topic of "ethics" as it relates to BIID. Bain & Levy (again, found on Main Page - BIID-Info.org) suggest that it is actually inethical to let people with BIID suffer.

The way *I* see it, it's a bit like chopping a leg off for someone who has cancer. On the face of it, it's doing damage to the body to remove the limb, but it's in fact saving the patient's life. BIID is like a cancer, it eats us up inside. And while the only evidence that surgery works is anecdotal, that evidence is in fact pretty solid. It is not our fault that researchers have opted NOT to actually study those invididuals who have successfully achieved their desired body image.

And I find it extremely difficult to accept that so many people are so deadset against us becoming what we need to be. Granted, for many people with BIID, they have no real clue of what it's like to have such an impairment. But then again, for many of us, we do. I have lived well over a decade as a full time wheelchair user. I was married to a paraplegic woman who knew about me (before you ask, we didn't split up, she died). I worked with and for people with disabilities. oh, abd BTW, I sign, too, not because I want/need to be deaf, but because many of my friends are. I'm FULLY aware of what it is I'm after, as aware as anyone without an SCI can be, and probably better aware than many people in the medical field.

What is it about disabilities and impairments that society fights so hard to prevent? Isn't such denial of surgery as a treatment option a way of saying "disabilities are negative"?? But I digress.

As for the medical professionals who recognise the condition but have no treatment option to offer... The majority of medical professionals are completely out of their depth with BIID. Then there have been those who tried different treatments, but nothing's worked. The conclusion is: the only form of treatment that we know for a fact works is surgery. But we get denied that. So since nothing works but one thing, and that one thing isn't being offered, the medicos have nothing to offer.

I've tried many things to "get rid" of BIID. I've been on a variety of drugs (a list too long and boring to list here), with no result. I've been in therapy for years, and yes, I do have a real desire to understand where my "booboo" comes from, but understanding doesn't heal, doesn't solve. I've tried a variety of therapy styles. NOTHING WORKS.

So please, Jillio, check your professional assumptions at the door and make your sweeping statements once you're better informed, and keep an open mind about it. Because until then, there's no point continuing talking. It's like having a discussion with a brick wall otherwise.

You cannot compare Gender Identity Disorder with a disorder that has yet to even be recognized by the medical/psychiatric community. GID is diagnosable under DSM IV TR criterion, this disorder you have termed BIID is not. Perhaps, at some point in the future, it will be recognizd by the psychiatric and therapuetic communities; however, as of yet, it is not. Therefore, you are claiming an illness that for all practical purposes, does not exist. If you have engaged in a number of therapies, no doubt you also have an official diagnoisis....and as it is not recongnized by the DSM or the meidcal community, BIID is not the diagnosis.

I would imagine your therapists have pretty much said the same thing; like talking to a brick wall. Obviously, from your assertions, you have no desire to be treated and relieved of your obsession. You are interested only in fulfilling your obsession.

Here is what you desire: You are a very unique group of individuals that even the most educated and experienced members of the medical community can't diagnose and treat. You are special. You are different. You deserve every one's pity and understanding. You are the center of attention.

Quite frankly, however, you are no different than any of the other number of individuals who engage in self-destructive behavior. Get serious about treatment.

Likewise, your reference to somatoparaphrenia is hardly comparable. Somatoparaphrenia is the result of damage to the parietal lobe, and can be diagnosed through CAT scan indicating the damaged lobe. It is a congnitive disorder resulting from damage tot he brain. If BIID were indeed a form of this disorder, irregularities int he parietal lobe could be detected. To date, there has been no evidence of neurological etiology for BIID. Quite obviously, you spend a good deal of your time reading medical texts in order to justify your illness, however, you are attempting to compare illnesses that have a diagnositic criterion with somethingthat does not. Youare attempting to compare a disorder with one that has a neuroligical base that can be proven with differential diagnosis to one that cn not.

Kaitin · 10-20-2007, 10:40 PM

My roommate read this thread (more than me) and we talked. Now I wonder about BIID and anorexia. Doesn't people with anorexia think they are too fat? But no surgeon would do gastric bypass or give diet pills. Isn't anorexia a problem about body images? Are anorexia and BIID similar?

Thank you to any replies.

---

ClaireC: Sorry - I didn't see your post. What is "somatoparaphrenia"? Does the article you quote mean that BIID is from brain damage? Also I had caloric testing I had caloric testing for dizziness - hot or cold water in ears, right? You had caloric testing for 24 hours? How?

I will read your blog. Thank you for your answer, link and patient reply.

wylz · 10-20-2007, 10:47 PM

Quote:

Originally Posted by Kaitin

To me mental illness = a problem to be cured or tried to. It is not healthy and not seen as "the normal". Maybe it doesn't matter to the person though. I know nothing about any of thread, so I maybe shouldn't say. I am trying to understand and I am so surprised with the replies.

Learning new stuff is always good

I think that your perception of "mental illness" very much follows the medical model. In that model, such an illness is indeed something to be cured. In the medical model of disabilities, deafness is also something wrong, something broken, to be cured. I know many Deafies who disagree with the idea that their deafness is something broken or to be cured. It really is all a question of perception. Whether you call it a mental illness, or a psychological disorder, it just *is*. While it is distressing and problematic to have a mental illness (I also suffer from chronic depression), it should be no more a problem than being paralysed, being deaf, or being blind. It simply is a different state of being. I wrote more about this here: Impairment vs. Disability - BIID-Info.org

Quote:

Originally Posted by Kaitin

Is saying "pretending to be handicapped" correct (before surgery)? Is "pretending" bad or offensive?

I don't think the term "pretending" is bad or offensive. It depends a bit on how you apply it. I don't pretend to use a wheelchair, i'm really using a wheelchair. Because my self-image is that of a paraplegic, when asked, I do "pretend" to having paraplegia.

Quote:

Originally Posted by Kaitin

Do you tell family and friends?

Some people have told their family and friends, others haven't. Many people with BIID have strong feeling of shame and guilt associated to it, and it is hard to tell. Also, for some people, they kept this hidden from their family for so long that telling them now would show a breach of trust, so it is not really possible.

I myself have told my parents, who don't understand it, nor do they accept it. They are dealing not only with the fact I have BIID, but with the fact of their own negative prejudice against disabilities in general. I suppose it is not easy on any parents to learn their kids has something like this and would be easy for them to feel guilty, to think they've done something wrong. My parents have indeed done many wrong things, but I don't believe they are the cause of my BIID. I have told many of my friends also, with more or less success. I have promised myself to tell the truth with anyone I become significantly involved with romantically. I have currently been together with the same woman for several years and it was one of the first things I told her about me when I saw it was turning out to be serious. There are many ups and downs with it.

Quote:

Originally Posted by Kaitin

With homosexuality people say often "I knew when I was a young kid" - same with BIID?

My earliest memory goes back to age 3 or 4. That is, my earliest memory about anything, and it also happens to be my earliest memory related to BIID. Most people recall memories back to the pre-teens (see Smith, M. 2005, Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder. Psychological Medecine, available through CJO - Abstract - Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder or through Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder - BIID-Info.org). There are also several short entries from transabled individuals (that is, people who have BIID on the transabled.org blog in the "Early memories" category: Early memories » transabled.org » Blogging about BIID )

Quote:

Originally Posted by Kaitin

And how common is BIID? Extremely rare?

It's hard to say, really. Ten years ago, there weren't many people who knew about it, and there weren't many people in the "wannabe" circles. But as time goes on and awareness of the condition evolves, more and more people are identifying as having BIID. Most of these people always had the feelings, but thought they were the only ones in the world. Some BIID discussion groups have a couple thousand participants. I don't think it's that prevalent in society, but I suspect it's more prevalent than we could think of at first.

Quote:

Originally Posted by Kaitin

What is "transfestic fetishism"? (If this is adult-only, please say and don't answer - this isn't adult-only spot. Thank you.)

It should in fact have been written transvestic fetishism. It is somewhat adult related, but I don't believe the explanation is x-rated or innapropriate for youths.

Transvestic is related to transvestism, which is generally understood as someone wearing clothes of the opposite gender. Generally guys dressing up as women, because for some strange reasons it's ok for women to wear men's clothes in our society, but not the other way around! Fetishism is having a fetish for, or being inordinately sexually attracted by something. So transvestic fetishism would be to be turned on by guys who wear women's clothing (that is a very broad definition, of course).

wylz · 10-20-2007, 10:50 PM

Quote:

Originally Posted by Kaitin

My roommate read this thread (more than me) and we talked. Now I wonder about BIID and anorexia. Doesn't people with anorexia think they are too fat? But no surgeon would do gastric bypass or give diet pills. Isn't anorexia a problem about body images? Are anorexia and BIID similar?

There are many differences between anorexia, which is generally accepted as a form of Body Dysmorphic Disorder and BIID. One of them, as I explained earlier, that someone with anorexia perceives their body as being "wrong", when in fact their body is fine. People with BIID know their body is "normal", but the mental "body map", or body image is not aligned with the actual body. In a perfect world, we'd be able to align the mental map to the reality, but it doesn't work. While some treatment works for people who have anorexia (although very few actually do work, it's always an exercise in management), there are no non-surgical treatment that works for BIID.

jillio · 10-20-2007, 10:59 PM

Quote:

Originally Posted by Kaitin

My roommate read this thread (more than me) and we talked. Now I wonder about BIID and anorexia. Doesn't people with anorexia think they are too fat? But no surgeon would do gastric bypass or give diet pills. Isn't anorexia a problem about body images? Are anorexia and BIID similar?

Thank you to any replies.

No. Anorexia is an eating disorder, and is characterized by a refusal to maintain a minimally normal body weight. Obessive compulsive features, both related and unrelated to food, ar often prominent. An additional diagnosis of obesseive compulsive disorder is often found in individuals with Anorexia Nervosa. Other features that are often associated with Anerexia Nervosa include concerns about eating in public, feelings of ineffectiveness, a strong need to control one's environment, inflexible thinking, limited social spontaneity, perfectionsim, and overly restrained intitiative and emotional expression. A substantial portion of individuals with Aneorexia Nervosa have a personality disturbance that meets criteria for at least one Personality Disorder.

As you can see, the failure to maintain a minimally accepted weight is but a symptom of the actual disorder. One must treat the underlying illness; or in many cases, illnesses, in order to alleviate the symptoms.

In addition, Aneorexia Nervosa is a recognized and diagnosable mental illness under the DSM IV TR criteria. BIID is not. The deisre to become disabled is a manifestation of obsessive/compulsive thought patterns.

While I do not disagree that these individuals are extremely disturbed, the fact still remains that BIID is not a diagnosable disorder. That doesn't mean that they do not have a diagnosable disorder, it simply means that they are diagnosed with something other than BIID.

wylz · 10-20-2007, 11:02 PM

Quote:

Originally Posted by jillio

You cannot compare Gender Identity Disorder with a disorder that has yet to even be recognized by the medical/psychiatric community. GID is diagnosable under DSM IV TR criterion, this disorder you have termed BIID is not.

Ok, I'm not sure how to state this any more clearly than it has been stated already, but I'll try:

BIID (Body Integrity Identity Disorder) is a term that was proposed by Dr. Michael First. Dr. First is a world recognised psychiatrist. Dr. First is also the editor of the DSM-IV-TR, as well as the leading editor for the DSM-V.

As I have said, it is not because something is not (yet) in the DSM that it does not exist. GID (Gender Identity Disorder) was well known for centuries before surgery became an approved treatment option. And it took decades after that before it was included in the DSM. Nobody could (reasonably) claim that GID did not exist because it was not listed in the DSM.

Quote:

Originally Posted by jillio

I would imagine your therapists have pretty much said the same thing; like talking to a brick wall. Obviously, from your assertions, you have no desire to be treated and relieved of your obsession. You are interested only in fulfilling your obsession.

You are offensive and have obviously chosen to ignore what we are saying. If there was a therapy that actually worked, I would use it. Me thinks you are just flame baiting at this point.

Quote:

Originally Posted by jillio

You are a very unique group of individuals that even the most educated and experienced members of the medical community can't diagnose and treat. You are special. You are different. You deserve every one's pity and understanding. You are the center of attention.

Again, you've obviously not read nor accepted what we're saying. It's not about pity, it's not about attention.

Quote:

Originally Posted by jillio

Get serious about treatment.

What part of "there are no treatment options (other than surgery) that actually work on this" don't you understand?

Quote:

Originally Posted by jillio

Likewise, your reference to somatoparaphrenia is hardly comparable.

Again, you haven't read what was written. Otherwise, you would have seen that it is not myself, nor Claire, nor anyone with BIID that has made that comparison, but Dr. V.M. Ramachandran, a world reknown neurologist. I don't know that I agree with Dr. Ramachandran or not, but I'll trust him over you any day of the week.

I am done responding to you Jillio. While I enjoy a good and honest discussion about this topic with people who are actually taking the time to listen to what I have to say, I have no time, energy or desire to keep arguing with someone who has pre-conceived ideas about something and will not budge from that, no matter what.

jillio · 10-20-2007, 11:06 PM

Quote:

Originally Posted by Kaitin

My roommate read this thread (more than me) and we talked. Now I wonder about BIID and anorexia. Doesn't people with anorexia think they are too fat? But no surgeon would do gastric bypass or give diet pills. Isn't anorexia a problem about body images? Are anorexia and BIID similar?

Thank you to any replies.

---

ClaireC: Sorry - I didn't see your post. What is "somatoparaphrenia"? Does the article you quote mean that BIID is from brain damage? Also I had caloric testing I had caloric testing for dizziness - hot or cold water in ears, right? You had caloric testing for 24 hours? How?

I will read your blog. Thank you for your answer, link and patient reply.

Somatoparaphrenia is the result of traumatic injury resulting in damage to the parietal lobe in the brain. It can be diagnosed by CAT scan indicating the damaged area in the brain. It is not a mental illness. It is a neurological disorder with a biological casue. It cannot be compared to the desire to become disabled. If BIID were indeed caused by irregularities in the parietal lobe, those irregularites could be determined upon neurological examination.

jillio · 10-20-2007, 11:12 PM

Quote:

Originally Posted by wylz

Ok, I'm not sure how to state this any more clearly than it has been stated already, but I'll try:

BIID (Body Integrity Identity Disorder) is a term that was proposed by Dr. Michael First. Dr. First is a world recognised psychiatrist. Dr. First is also the editor of the DSM-IV-TR, as well as the leading editor for the DSM-V.

As I have said, it is not because something is not (yet) in the DSM that it does not exist. GID (Gender Identity Disorder) was well known for centuries before surgery became an approved treatment option. And it took decades after that before it was included in the DSM. Nobody could (reasonably) claim that GID did not exist because it was not listed in the DSM.

You are offensive and have obviously chosen to ignore what we are saying. If there was a therapy that actually worked, I would use it. Me thinks you are just flame baiting at this point.

Again, you've obviously not read nor accepted what we're saying. It's not about pity, it's not about attention.

What part of "there are no treatment options (other than surgery) that actually work on this" don't you understand?

Again, you haven't read what was written. Otherwise, you would have seen that it is not myself, nor Claire, nor anyone with BIID that has made that comparison, but Dr. V.M. Ramachandran, a world reknown neurologist. I don't know that I agree with Dr. Ramachandran or not, but I'll trust him over you any day of the week.

I am done responding to you Jillio. While I enjoy a good and honest discussion about this topic with people who are actually taking the time to listen to what I have to say, I have no time, energy or desire to keep arguing with someone who has pre-conceived ideas about something and will not budge from that, no matter what.

And, what you have posted is nothing more than untested hypotesis. And the fact that you are willing to discuss the subject with only those who will listen and symapthize is simply more evidence of underlying motivation.

And the fact of the matter is, GID is a recognized disorder and is diagnosable under DSM IV TR criteria. BIID is not. What exxactly, is your official diagnosis? If you have attempted treatments as you claim, you have an official diagnosis. It certainly isn't BIID.

Kaitin · 10-21-2007, 12:33 AM

Quote:

Originally Posted by wylz

There are many differences between anorexia, which is generally accepted as a form of Body Dysmorphic Disorder and BIID. One of them, as I explained earlier, that someone with anorexia perceives their body as being "wrong", when in fact their body is fine. People with BIID know their body is "normal", but the mental "body map", or body image is not aligned with the actual body. In a perfect world, we'd be able to align the mental map to the reality, but it doesn't work. While some treatment works for people who have anorexia (although very few actually do work, it's always an exercise in management), there are no non-surgical treatment that works for BIID.

Maybe I misunderstand (I also don't know anything about anorexia really), but don't people with anorexia have a "body image is not aligned with the actual body" because their body is thin and their body image is fat?

I Googled "BIID DSM" because I didn't know about DSM before (seems I know nothing!

)) and found a page about a scientific meeting for BIID. It said

"Dr. Lawrence defined the term "paraphilia" using the DSM-IV criteria, and discussed the interaction of paraphilia and identity in Gender Identity Disorder. Dr. Lawrence posed the question "Is the desire for amputation a paraphilia?" She also covered objections to the idea that the paraphilia model applies to BIID.
Dr. Lawrence discussed a paradigm referred to as the "Erotic Target Location Error" model (developed by Drs. Freund and Blanchard)."

More questions!

What is "paraphilia"? Is that the need to be paralyzed? And "erotic target location error"? (Again, don't want to start adult-only conversation.) This sounds like a wrong love bomb!

It also said "members of the community who attempt self-amputation". People with BIID try to amputation on themselves? Honest? Wow. Do people die?

Last, it said "Require that reversible measures be tried first: e.g.-high dose sustained trial of SSRI (e.g. Prozac, Zoloft, etc.), and psychotherapy
# Insure that some sort of assistance is available to the full-spectrum of people with BIID, including those not seeking surgery at this time". So does SSRI help? And some with BIID don't want surgery? So BIID can be mild or severe?

Kaitin · 10-21-2007, 12:43 AM

Quote:

Originally Posted by wylz

I think that your perception of "mental illness" very much follows the medical model. In that model, such an illness is indeed something to be cured. In the medical model of disabilities, deafness is also something wrong, something broken, to be cured. I know many Deafies who disagree with the idea that their deafness is something broken or to be cured. It really is all a question of perception.

Hadn't thought about your point before. Now I need to think more about it.

Quote:

Originally Posted by wylz

Some people have told their family and friends, others haven't. Many people with BIID have strong feeling of shame and guilt associated to it, and it is hard to tell. Also, for some people, they kept this hidden from their family for so long that telling them now would show a breach of trust, so it is not really possible.

I myself have told my parents, who don't understand it, nor do they accept it. They are dealing not only with the fact I have BIID, but with the fact of their own negative prejudice against disabilities in general. I suppose it is not easy on any parents to learn their kids has something like this and would be easy for them to feel guilty, to think they've done something wrong. My parents have indeed done many wrong things, but I don't believe they are the cause of my BIID. I have told many of my friends also, with more or less success. I have promised myself to tell the truth with anyone I become significantly involved with romantically. I have currently been together with the same woman for several years and it was one of the first things I told her about me when I saw it was turning out to be serious. There are many ups and downs with it.

Seems hard. If I had a kid who wanted to remove a leg, I would struggle about this and try therapy to change him. But now with your comparison with deaf I don't know. I always think a kid should decide on CIs, not parents because CI destroys hearing. Should a kid decide on BIID? I don't know.

Quote:

Originally Posted by wylz

My earliest memory goes back to age 3 or 4. That is, my earliest memory about anything, and it also happens to be my earliest memory related to BIID.

Wow. Thank you for sharing.

Quote:

Originally Posted by wylz

It's hard to say, really. Ten years ago, there weren't many people who knew about it, and there weren't many people in the "wannabe" circles.

Are "wannabes" different than people with BIID or same?

[QUOTE=wylz;857732]It should in fact have been written transvestic fetishism. It is somewhat adult related, but I don't believe the explanation is x-rated or innapropriate for youths.

Quote:

Originally Posted by wylz

Transvestic is related to transvestism, which is generally understood as someone wearing clothes of the opposite gender. Generally guys dressing up as women, because for some strange reasons it's ok for women to wear men's clothes in our society, but not the other way around! Fetishism is having a fetish for, or being inordinately sexually attracted by something. So transvestic fetishism would be to be turned on by guys who wear women's clothing (that is a very broad definition, of course).

It is: A man "Joe" wears womans clothing and he finds wearing it sexy? Or a man "Bob" finds Joe wearing womans clothing sexy?

Thank you for replies. I know I am asking too many questions!

Kaitin · 10-21-2007, 12:54 AM

Hi, Jillio: For you: "dominant index with fist closed and index finger up - moves hand to forehead - bends index finger"

Jillio, do you think that BIID is obsessive compulsive disorder? Or what other "diagnosable disorder"?

wylz · 10-21-2007, 12:55 AM

Quote:

Originally Posted by Kaitin

Maybe I misunderstand (I also don't know anything about anorexia really), but don't people with anorexia have a "body image is not aligned with the actual body" because their body is thin and their body image is fat?

It is a subtle difference, easy to misunderstand. Someone with anorexia thinks their body is fat, but it is normal. We know our body are normal, but our body feels alien.

Quote:

Originally Posted by Kaitin

I Googled "BIID DSM" because I didn't know about DSM before (seems I know nothing!

)) and found a page about a scientific meeting for BIID.

That meeting/conference took place a long time ago and the organisers haven't been active at all in a long time. Also, you have to be careful about what Dr. Lawrence puts forward, as Marie stated, she is not particularly respected in the field of gender identity disorder, nor in the field of BIID.

Quote:

Originally Posted by Kaitin

What is "paraphilia"?

A term coined by Dr. John Money, basically an "umbrella" label to encompass all kind of atypical or abnormal sexual desires/behaviours. You can learn more here: Paraphilia - BIID-Info.org

Quote:

Originally Posted by Kaitin

And "erotic target location error"?

A fairly complex concept that would be better off discussed elsewhere

You may read more about it here:
Clinical and Theoretical parallels Between Desire for Limb Amputation and Gender Identity Disorder - BIID-Info.org

Quote:

Originally Posted by Kaitin

It also said "members of the community who attempt self-amputation". People with BIID try to amputation on themselves? Honest? Wow. Do people die?

Some people have died, yes. Many people have achieved what they wanted. Those people who have become amputee all report being happier now than they were before. Almost all of them say that their only regret was not to have done it earlier.

Quote:

Originally Posted by Kaitin

So does SSRI help? And some with BIID don't want surgery? So BIID can be mild or severe?

No, SSRI do not help. It is my personal experience, as well as that of everyone I have spoken to (several dozen individuals with BIID) who have been on various medication to get rid of BIID that these drugs do not work.

Some people with BIID do not want surgery (another parralel with the GID condition).

BIID can indeed be mild or severe, and in general tends to worsen with time.

Kaitin · 10-21-2007, 01:03 AM

Sean: I will read more later - my roommate too. So fascinating! I don't know if I will understand ever, but it is interesting to learn.

I read link about "paraphilia". Wow. So is BIID a paraphilia for some (unusual sex interst about amputation or paralysis)? I don't mean to make this thread adult-only, but I know you won't.

Thank you!

----

BF here! I want to talk to him about the thread - he will say "

but may have better understanding of these ideas than me. He always says I am naeve (AD - we need a spellcheck!) - may he knows BIID before.

wylz · 10-21-2007, 01:09 AM

Quote:

Originally Posted by Kaitin

do you think that BIID is obsessive compulsive disorder? Or what other "diagnosable disorder"?

It is an easy assumption to make, and to be fair, there is an obssessive element to BIID, but it is not OCD. Drugs and OCD treatments tried on people with BIID have not worked. Again, this is not just me saying so, but professionals in the field of psychology and psychiatry.

Quote:

Originally Posted by Kaitin

Hadn't thought about your point before. Now I need to think more about it.

Sorry

Quote:

Originally Posted by Kaitin

Seems hard. If I had a kid who wanted to remove a leg, I would struggle about this and try therapy to change him.

Yes, it seems hard, and for a parent, it would be a struggle. The thing is, you have to ask yourself: Is living life as an amputee, or as a paraplegic, or blind, such a disaster? Is it not just another way of being? Just like being deaf?

Many of my friends who have physical mobility disabilities have heard it said often: people say "I'd rather be dead than disabled". Is it not a nice change for us to say "I'd rather be dead than NOT disabled"??

[QUOTE=Kaitin;857797] I always think a kid should decide on CIs, not parents because CI destroys hearing. Should a kid decide on BIID? I don't know.

BIID destroys lives. My life has been pure hell for as long as I can remember. I could have avoided a LOT of pain and anguish had I been able to become paraplegic earlier in my life.

Should kids decide on BIID? Well, the question is a bit different. Kids (or anyone) don't decide to have BIID, we just do. The question should be "should kids be able to decide to go for surgery?". That is a very tricky question. I do think that children should be forced to wait, at least until their late teens or early twenties. I also think that therapy should be mandatory before surgery. To make sure people understand why they feel the way they do, as much as possible. To ensure that the request for amputation/spinal cord transection/whatever is not a result of something other than BIID (like Munchausen or other disorder). I also think that where possible, a "real life test" should be given. I talk more about treatment protocols here:
Treatment Protocol - BIID-Info.org

Quote:

Originally Posted by Kaitin

Are "wannabes" different than people with BIID or same?

Wannabes is the name that was used to describe people who have BIID, before the term Body Integrity Identity Disorder was suggested by Dr. First. I have never liked that word, as it seems somewhat pejorative, and doesn't describe it well. But it is still in usage a lot. I personally prefer the term "transabled" to describe someone with BIID, like transsexual describes someone with GID.

Quote:

Originally Posted by Kaitin

It is: A man "Joe" wears womans clothing and he finds wearing it sexy? Or a man "Bob" finds Joe wearing womans clothing sexy?

Both, in some cases

Quote:

Originally Posted by Kaitin

Thank you for replies. I know I am asking too many questions!

You're welcome, and no, you aren't asking too many questions.

wylz · 10-21-2007, 01:10 AM

Quote:

Originally Posted by Kaitin

Sean: I will read more later - my roommate too. So fascinating! I don't know if I will understand ever, but it is interesting to learn.

Thank you!

You're welcome. Please don't hesitate to contact me directly through the contact form on Contact » transabled.org » Blogging about BIID

Claire_C · 10-21-2007, 03:35 AM

Quote:

Originally Posted by Kaitin

ClaireC: Sorry - I didn't see your post. What is "somatoparaphrenia"? Does the article you quote mean that BIID is from brain damage? Also I had caloric testing I had caloric testing for dizziness - hot or cold water in ears, right? You had caloric testing for 24 hours? How?

No fair to keep answering questions after I said I was leaving!

Just kidding, I'm happy to answer questions, I just feel silly now.

Somatoparaphrenia is caused by a stroke and patients deny that certain body parts belong to them. Somatoparaphrenia - Wikipedia, the free encyclopedia
The "monothematic delusion" part is quite interesting. It means that the patient is otherwise perfectly intelligent and rational.

Ramachandran is hypothesizing that BIID would be a kind of congenital somatoparaphrenia. I say "congenital" because (also in answer to another question of yours) people with BIID have memories of their desires going back to very early childhood. That indicates that it's not brain damage but more of an irregularity of the circuitry of the brain. As for me, it started when I was about 5 years old (or at least, my first memory of it dates back to that time). I used to pretend I was "crippled" all the time. When I played house with my friends I always wanted to be in a wheelchair and they would get exasperated with me because we didn't HAVE a wheelchair to play with, and besides, they didn't see what was so fun about that. lol

The VCS didn't last for 24 hours, just the effects of it did. For 24 hours I experienced a marked lessening in the desire to be paraplegic. Someone with somatoparaphrenia will actually admit that they "own" their disowned body parts for about 24 hours after VCS and then they will revert to denying it. So, basically the VCS is not used to actually cure the condition but to verify the location and nature of the irregularity. I am not quite ready to say that it "worked", because I was extremely ill for much of that time, and one could guess that I was simply too ill to think much about anything else. But if Ramachandran's research finds that the vast majority of BIID sufferers also experience what I experienced that could be proof that his hypothesis is correct. We'll have to wait and see on that one, as the study is ongoing.

FWIW, I was forewarned of the effects of VCS and I went willingly to this study, spending a great deal of money to get myself to California, and ended up retching miserably into a bucket in the lab and feeling just about as awful as I ever have in my life. If that's not proof of a desire and willingness to find treatment for this condition, then I don't know what is. *shrug*

jillio · 10-21-2007, 12:22 PM

Quote:

Originally Posted by Kaitin

Hi, Jillio: For you: "dominant index with fist closed and index finger up - moves hand to forehead - bends index finger"

Jillio, do you think that BIID is obsessive compulsive disorder? Or what other "diagnosable disorder"?

I think it is a four or five pronged diagnosis, Presonality Disorder with obsessive compulsive features, body dysmorphic disoder, probably depressive symptoms, and adjustment issues as well. These are all easliy diagnosed within DSM IV TR criterion, and the symptomology described by these indiviudals fits within the parameters needed for diagnosis.

jillio · 10-21-2007, 12:28 PM

Quote:

Originally Posted by Claire_C

No fair to keep answering questions after I said I was leaving!

Just kidding, I'm happy to answer questions, I just feel silly now.

Somatoparaphrenia is caused by a stroke and patients deny that certain body parts belong to them. Somatoparaphrenia - Wikipedia, the free encyclopedia
The "monothematic delusion" part is quite interesting. It means that the patient is otherwise perfectly intelligent and rational.

Ramachandran is hypothesizing that BIID would be a kind of congenital somatoparaphrenia. I say "congenital" because (also in answer to another question of yours) people with BIID have memories of their desires going back to very early childhood. That indicates that it's not brain damage but more of an irregularity of the circuitry of the brain. As for me, it started when I was about 5 years old (or at least, my first memory of it dates back to that time). I used to pretend I was "crippled" all the time. When I played house with my friends I always wanted to be in a wheelchair and they would get exasperated with me because we didn't HAVE a wheelchair to play with, and besides, they didn't see what was so fun about that. lol

The VCS didn't last for 24 hours, just the effects of it did. For 24 hours I experienced a marked lessening in the desire to be paraplegic. Someone with somatoparaphrenia will actually admit that they "own" their disowned body parts for about 24 hours after VCS and then they will revert to denying it. So, basically the VCS is not used to actually cure the condition but to verify the location and nature of the irregularity. I am not quite ready to say that it "worked", because I was extremely ill for much of that time, and one could guess that I was simply too ill to think much about anything else. But if Ramachandran's research finds that the vast majority of BIID sufferers also experience what I experienced that could be proof that his hypothesis is correct. We'll have to wait and see on that one, as the study is ongoing.

FWIW, I was forewarned of the effects of VCS and I went willingly to this study, spending a great deal of money to get myself to California, and ended up retching miserably into a bucket in the lab and feeling just about as awful as I ever have in my life. If that's not proof of a desire and willingness to find treatment for this condition, then I don't know what is. *shrug*

Its a willingness to continue to undergo medical treatment in order to receive attention. Your childhood behavior indicates that these problems are by now deeply seated. Perhaps they should ahve been addressed when you were engaging in abnormal behaviors as a child rather than being ignored.

And once again, what you claim is no more than hypothesis. In other words.....a great big maybe. The diagnosis still does not exist.

Are you going to share with us what your official diagnosis is?

Claire_C · 10-21-2007, 02:45 PM

Quote:

Originally Posted by jillio

Are you going to share with us what your official diagnosis is?

I thought that question was in response to wylz. I'm not sure what the point is since whatever I say, you won't believe me. But you have successfully goaded me into answering, the more fool me.

So fwiw: My psychologist concurs that I have BIID as she did research once I came to her with it, and it fit what she read on the subject. Not being in the DSM was not an issue for her as she knows that the DSM is a guide and not the infallible divinely inspired repository of all there is to know about the human condition. The neurologist that I have seen also concurred that I had BIID and wrote a letter to my GP to explain the situation. My GP took it at face value and says she will do her own research and talk to my psy, but I haven't seen her since then.

The two other mental health professionals that I saw did not diagnose me as they had never heard of the condition/symptoms. They referred me on twice to someone else better qualified to treat a rare condition (and may I add, someone open minded enough to accept the fact that it's possible that they don't know everything and there there is something still yet to learn in this field).

I will answer no further questions from you until you show a willingness to open up your mind or at the very least show a little humanity.

You could start by posting the URLs of the scholarly and research documents that you have read to back up your claims that BIID does not exist and is merely a conglomeration of several concurrent conditions.

jillio · 10-21-2007, 03:25 PM

Quote:

Originally Posted by Claire_C

I thought that question was in response to wylz. I'm not sure what the point is since whatever I say, you won't believe me. But you have successfully goaded me into answering, the more fool me.

So fwiw: My psychologist concurs that I have BIID as she did research once I came to her with it, and it fit what she read on the subject. Not being in the DSM was not an issue for her as she knows that the DSM is a guide and not the infallible divinely inspired repository of all there is to know about the human condition. The neurologist that I have seen also concurred that I had BIID and wrote a letter to my GP to explain the situation. My GP took it at face value and says she will do her own research and talk to my psy, but I haven't seen her since then.

The two other mental health professionals that I saw did not diagnose me as they had never heard of the condition/symptoms. They referred me on twice to someone else better qualified to treat a rare condition (and may I add, someone open minded enough to accept the fact that it's possible that they don't know everything and there there is something still yet to learn in this field).

I will answer no further questions from you until you show a willingness to open up your mind or at the very least show a little humanity.

You could start by posting the URLs of the scholarly and research documents that you have read to back up your claims that BIID does not exist and is merely a conglomeration of several concurrent conditions.

I see......so you sought out a psychologist that would validate your self diagnosis. And my point stands....you cannot be diagnosed with a disorder that for all practical purposes does not exist. There are psychologists out there that will validate a patients claim that they have been absucted by aliens,as well, but not ethical ones. Perhaps if you found a psychologist who treated your primary disorder, rather than the one with which you have diagnosed yourself you would be much more successful in treatment.

I have already posted reference to the DSM IV TR, the manual used by professionals in the field to diagnose mental illness. This is the accepted standard of practice for psycholgists, psychiatrists, and clinical counselors. It is compiled by the top practitioners within the field and is based on the most current research.

If you are looking for support for your disorder, I suggest you return to the websites that are designed to help you continue in your illness.

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10-20-2007, 07:30 PM	#62 (permalink)
Kaitin Registered User Join Date: Oct 2007 Posts: 845 Blog Entries: 23	"BIID" into PubMed: Amputees by choice: body integrity identity disorder and the ethics of amputation. Bayne T, Levy N. Department of Philosophy, Macquarie University, Sydney, NSW 2109 Australia. tbayne@scmp.mq.edu.au Should surgeons be permitted to amputate healthy limbs if patients request such operations? We argue that if such patients are experiencing significant distress as a consequence of the rare psychological disorder named Body Integrity Identity Disorder (BIID), such operations might be permissible. We examine rival accounts of the origins of the desire for healthy limb amputations and argue that none are as plausible as the BIID hypothesis. We then turn to the moral arguments against such operations, and argue that on the evidence available, none is compelling. BIID sufferers meet reasonable standards for rationality and autonomy: so as long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests. Very surprising to me! --- Healthy limb amputation: ethical and legal aspects. Johnston J, Elliott C. Center for Bioethics, University of Minnesota, Minneapolis 55408, USA. A surgeon in Scotland has amputated the legs of two consenting, physically healthy patients. Although a handful of medical professionals believe that the desire for healthy limb amputation is symptomatic of a mental disorder that can be treated only by amputation, there is currently no consensus on what causes a person to desire such a disabling intervention. As long as there is no established body of medical opinion as to the diagnosis and treatment of such a condition, performing the surgery may be a criminal act. Given the ethically problematic history of surgery for psychiatric conditions, as well as the absence of sound medical data on this condition, surgeons should exercise great caution before complying with a request to amputate a healthy limb. --- Clinical and theoretical parallels between desire for limb amputation and gender identity disorder. Lawrence AA. alawrence@mindspring.com Desire for amputation of a healthy limb has usually been regarded as a paraphilia (apotemnophilia), but some researchers propose that it may be a disorder of identity, similar to Gender Identity Disorder (GID) or transsexualism. Similarities between the desire for limb amputation and nonhomosexual male-to-female (MtF) transsexualism include profound dissatisfaction with embodiment, related paraphilias from which the conditions plausibly derive (apotemnophilia and autogynephilia), sexual arousal from simulation of the sought-after status (pretending to be an amputee and transvestism), attraction to persons with the same body type one wants to acquire, and an elevated prevalence of other paraphilic interests. K. Freund and R. Blanchard (1993) proposed that nonhomosexual MtF transsexualism represents an erotic target location error, in which men whose preferred erotic targets are women also eroticize their own feminized bodies. Desire for limb amputation may also reflect an erotic target location error, occurring in combination with an unusual erotic target preference for amputees. This model predicts that persons who desire limb amputation would almost always be attracted to amputees and would display an increased prevalence of gender identity problems, both of which have been observed. Persons who desire limb amputation and nonhomosexual MtF transsexuals often assert that their motives for wanting to change their bodies reflect issues of identity rather than sexuality, but because erotic/romantic orientations contribute significantly to identity, such distinctions may not be meaningful. Experience with nonhomosexual MtF transsexualism suggests possible directions for research and treatment for persons who desire limb amputation. I don't understand the underlined sentence. Transgender and BIID is not similar maybe? --- I hadn't read about this problem before and didn't think PubMed would have articles. I still don't understand really, but very interesting. I like reading about such differences that I haven't imagined before. Sean: What do you think? Thank you.

10-20-2007, 09:25 PM	#68 (permalink)
Claire_C Registered User Join Date: Oct 2007 Posts: 8	Kaitlin your sincere interest in learning more has me back for one last post. There is another document that you might find very interesting: Can vestibular caloric stimulation be used to trea...[Med Hypotheses. 2007] - PubMed Result Can vestibular caloric stimulation be used to treat apotemnophilia? Ramachandran VS, McGeoch P. Center for brain and cognition, UCSD, La Jolla, CA 9209, United States. Apotemnophilia, or body integrity image disorder (BIID), is characterised by a feeling of mismatch between the internal feeling of how one's body should be and the physical reality of how it actually is. Patients with this condition have an often overwhelming desire for an amputation- of a specific limb at a specific level. Such patients are not psychotic or delusional, however, they do express an inexplicable emotional abhorrence to the limb they wish removed. It is also known that such patients show a left-sided preponderance for their desired amputation. Often they take drastic action to be rid of the offending limb. Given the left-sided bias, emotional rejection and specificity of desired amputation, we suggest that there are clear similarities to be drawn between BIID and somatoparaphrenia. In this rare condition, which follows a right parietal stroke, the patient rejects (usually) his left arm as "alien". We go on to hypothesis that a dysfunction of the right parietal lobe is also the cause of BIID. We suggest that this leads to an uncoupling of the construct of one's body image in the right parietal lobe from how one's body physically is. This hypothesis would be amenable to testing by response to cold-water vestibular caloric stimulation, which is known to temporarily treat somatoparaphrenia. It could also be investigated using functional brain imaging and skin conductance response. If correct our hypothesis not only suggests why BIID arises, but also, in caloric stimulation a therapeutic avenue for this chronic and essentially untreatable condition. PMID: 17292561 [PubMed - indexed for MEDLINE] A couple notes on this. First, Ramachandran is one of the foremost neurologists in the world. He has written books (see the great reviews for his work at Amazon.com) and hosted BBC radio shows on the subject. Google his name and you'll find all kinds of ground-breaking research that he has conducted. Secondly, I actually participated in this study. They examined me and performed tests on me and it was their opinion that my kind of BIID is essentially the same condition as the more common desire for amputation. The vestibular caloric stimulation did seem to work for about 24 hours. That made sense because VCS works for about 24 hours on people with somatoparaphrenia as well. But I was sick for much of those 24 hours and so it's not really a viable treatment option and I'm not terribly sure that I wasn't simply distracted by the nausea. But it's a starting point and we'll hopefully know more about it once they have a lot of data to compare. (Note that Ramachandran changed the second I of BIID from Identity to Image - he believes it's a question of body image) Here is my blog entry on my trip to see Ramachandran and McGeoch: Vestibular Caloric Stimulation » transabled.org » Blogging about BIID Thanks Kaitlin for your sincere interest.

10-20-2007, 10:40 PM	#72 (permalink)
Kaitin Registered User Join Date: Oct 2007 Posts: 845 Blog Entries: 23	My roommate read this thread (more than me) and we talked. Now I wonder about BIID and anorexia. Doesn't people with anorexia think they are too fat? But no surgeon would do gastric bypass or give diet pills. Isn't anorexia a problem about body images? Are anorexia and BIID similar? Thank you to any replies. --- ClaireC: Sorry - I didn't see your post. What is "somatoparaphrenia"? Does the article you quote mean that BIID is from brain damage? Also I had caloric testing I had caloric testing for dizziness - hot or cold water in ears, right? You had caloric testing for 24 hours? How? I will read your blog. Thank you for your answer, link and patient reply.

10-21-2007, 12:54 AM	#81 (permalink)
Kaitin Registered User Join Date: Oct 2007 Posts: 845 Blog Entries: 23	Hi, Jillio: For you: "dominant index with fist closed and index finger up - moves hand to forehead - bends index finger" Jillio, do you think that BIID is obsessive compulsive disorder? Or what other "diagnosable disorder"?

10-21-2007, 01:03 AM	#83 (permalink)
Kaitin Registered User Join Date: Oct 2007 Posts: 845 Blog Entries: 23	Sean: I will read more later - my roommate too. So fascinating! I don't know if I will understand ever, but it is interesting to learn. I read link about "paraphilia". Wow. So is BIID a paraphilia for some (unusual sex interst about amputation or paralysis)? I don't mean to make this thread adult-only, but I know you won't. Thank you! ---- BF here! I want to talk to him about the thread - he will say " but may have better understanding of these ideas than me. He always says I am naeve (AD - we need a spellcheck!) - may he knows BIID before.